Restless Legs

[Hayley]

The pillow doesn't help me but if I crouch on all fours and go to sleep in that position it sometimes helps because my legs can't move!

Hayley

[Helly Welly]

Crikey, i'd get such bad pins and needles if i tried that!

[Livsmum]

Many people mention aneamia, are you all talking iron deficiency amaemia? I did notice Fiona-Jane, you mentioned folic acid... I have folate anaemia.

My legs started jumping in bed years ago, just as I was falling to sleep. I was told this was RLS. But this year the little jumps have become more big jerks and they last longer and happen anytime of the day or night. Sometimes my arms fly out too. Sometimes, if I am standing up it feels like the jerk goes through my whole body and they really hurt my back. On another thread it was described as looking like you're having an electric shock passing through your body. I have collapsed with them, although most of the time I find something to grab hold of! I have flung my laptop across the room, spilt drinks, kicked people....

So is this RLS or is this something else?

[serenity79]

I mentioned this in the medication-specific Tramadol thread as I thought it may have been related to that, but I have been having a lot of jerking recently. Mainly in bed, a lot of the time it's when I'm drifting off to sleep, but I'm also getting it through the day, my legs or ankles will jerk involuntarily, and it's so quick! Much quicker than I can actually physically move myself!! My leg will just 'shoot out'. Other times my shoulders will jerk. I'm already taking supplements which have iron in them and I had blood tests done recently so I know I'm not anaemic. I have been getting a lot of hypnagogic jerks as well. I used to have these sometimes, now it's several times a night.

I've also been experiencing a weird thing with my mouth, it's like my mouth is trembling but it's not up and down like teeth chattering, it's side to side?

[Livsmum]

serenity, my jerking got more and more frequent and stronger, also affecting other parts of my body besides my legs, anytime of the day etc...

I had an EEG to make sure I have a brain and the powers that be have decided my jerks are caused by my chronic pain and chronic fatigue, which have both worsened inline with the jerks. Apparently, so I was told, the brain is overloaded with these pain and fatigue messages and it can't cope and gets jumbled (my brain does that very easily anyway! ) and sends random messages back through the body causing the jerks. Do you find you jerk more when your pain or fatigue is worse? It could be the same thing. I had my amitrip dose trebled and this has help reduce the jerks and the nerve pain, so they are not making me fall over or kick people anymore!

[ladybirdscot]

I haven't read through all the replies to this thread because there are so many so I hope I'm not repeating anyone's suggestion.

Its the weirdest thing. Every night as I'm dropping off I get restless legs but kind of all over my body. You know that feeling when you jerk awake suddenly at the phone ringing or something? Well I get that. My whole body jerks as though I've had an electric shock.

Recently I've started listening to talking books. I fall asleep and lose track of the story which is a pain but the jerking has definitely reduced. I haven't tried it with music or a relaxation CD but it might be worth giving a go. It seems to have helped me!

[louloutinks]

hi I get restless legs at night in bed. I just have to move them as they feel like I have centipedes or the like moving inside them. I get them if I am standing too if I am really tired - but is this usual? I always get woken up by the most awful pins and needles- which I can get anywhere in my body. I have even got PandN in the back of my skull and another certain place. Very strange!!

Some nights are better than others though thank goodness.

[hyperbendy]

hi,i dont know if i get restless legs,but last night,i had this feeling in bed,like a rushing feeling,like energy going all over my body,and yet i was sooo tired,and then suddenly my legs would jerk,it happened with my back to,i nearly caused myself an injury! is this restless legs? ive been sat tonight and started to feel it coming on...It stops me falling asleep.Ive used my legs a lot today so maybe thats why? how can i stop this?

[forgetfulcat]

Hello - so glad to have found this thread as this link is another part of the jigsaw of my life that I'm trying to piece together. I am hypermobile and have just been diagnosed and have also suffered all my life with RLS - people who don't get it just have no idea how debilitating it is so I feel deeply for anyone else who has this. I know upthread someone else has mentioned tonic water so I thought I'd add my vote for this. I keep a little emergency bottle by my bed with a bottle opener for the really bad nights. It's about the only thing I have found that makes a reliable difference.

Someone mentioned it tasting foul (without the gin) too - If you can stretch to the Fever Tree ones (admittedly pricey but worth it imo!) it tastes loads better and is free of the nasties like aspartame which can make you feel shakey.

I have always referred to it (privately) as Wriggling Monsters because as a child the only way I could describe it to my parents was that it felt like little monsters wriggling up and down inside my veins. I generally try to remember to use the correct term when talking to HPs but I did once blurt out Wriggling Monsters to my GP instead of RLS - I was more than a little embarassed when I realised what I'd done!

[missmolly]

ohmygosh this is a real thing? I always thought I was crazy because at night I cannot keep my legs still. They ache and it's so annoyingggg

[balot]

I don't know if this is RLS, but I need to move around a lot because of nerve pain in my legs. Its pretty uncomfortable, especially if I have to sit at a desk or cramped lecture hall for more than half an hour at a time.

[raewire]

I'm another member of the restless legs brigade! I've had this issue for as long as I can remember. As mentioned by people further up the thread tonic water helps (I always have a supply next to the bed). As does distraction, I always listen to the radio, a calming cd or a talking book (I too lose track of the plot but it helps). Finally, as it's been so bad recently I've been prescribed Amitriptyline, I'm still working out dosage but I'm hopeful that this will help too. Tonic water is great for cramp during the day too, I always try to have a supply in the house, but I do have to make sure I have at least one bottle hidden, otherwise the hubby guzzles it all!

[PhoenixRising]

Wriggling Monsters sounds like a great name for it to me!

Mine was worst during pregnancies and then after I had my youngest. It was all over my body and when I lay in bed feeding him (we co-slept) I would end up crying because keeping still was so unbearable. With my older children I slept and nursed them through the night, sometimes would wake up and not even remember having fed them, but last time round I was lying awake half the night feeling like I was being tortured.

It is much better since I went gluten free but I still get it sometimes. I find it is worst is my feet and hands are hot, if I eat sugary food in the evening and I get hot, puffy hands and feet and restless legs, so I try to avoid that. Mine's not caused by iron deficiency, my Hb is always good.

My dad used to get it too, he called it "jumping leg", we used to sit watching Morse together and he'd keep thumping his leg on the floor. We kids used to laugh about it but now I know it is definately NOT funny! My dad didn't have HMS but his mum had many of the symptoms (her "rheumatics" etc) so I think the gene came via him.

[missteal]

This is a very interesting thread for me as I also have HMS, restless legs syndrome (wiggly legs) and endometriosis!! I know having HMS can make your periods extra painful anyway. I am currently on norethisterone to control my periods as I am the same as some of the other answers on here and have tried the normal pop pill, the mirena coil and the depo injection, all of which made me bleed constantly, this pill I'm on now is a much higher dose of progesterone. It's made me wonder whether the fact that HMS causes us to need more aenesthetic could also be the reason I need high levels of progesterone?? I also know that high levels of progesterone can make HMS worse, in my case drastically and I'm now in a catch 22 situation!!

I have read that over 66% of HMS sufferers also suffer with restless legs so it may be something to do with the joints being lax and squashing nerves?? I'm no doctor but I'm researching this disease constantly.

I take tramadol when my body is particularly wiggly and that seems to relieve it a lot.
xx

[mahdryburgh]

Hi missteal,
I forgot to put RLS into my signature! (Just as well, i had to whittle things down enough as it is to get it all under 255 characters! )

For me having a recurrence of RLS stuff usually means I'm getting anaemic again (I have Crohn's Disease and tend to get anaemic/very low ferritin levels when I'm having a flare-up). Magnesium supplements and avoiding caffeine have also helped me a lot.

I'm very interested in the research/reading you've done - do you have a reference/link for the one about HMS and RLS??
Fascinating stuff!